BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

[Sasha]

I think that the BMJ's RR are close to an internet forum - they have all sorts of barmy stuff up there.

The BMJ have serious problems with the way in which they cover issues around CFS, and the way in which they select which comments should be published in print, but I don't think that them posting this up online is a problem.

I disagree. Dr Shepherd also commented on MEA's Facebook page that pretty much anything gets through onto BMJ's RR pages and that they're not subject to the same level of editorial control as articles, but who is aware of that? I wasn't, until I read it just now, and I think it's a big mistake on the BMJ's part. They're a highly prestigious journal and they lend that prestige to anything they publish. I think they have to accept responsibility.

 

[Min]

And by the way, that guy is in charge of training GPs, according to his signature.

Dr L Sam Lewis appears to work here:

http://www.wales.nhs.uk/sites3/page.cfm?orgid=929&pid=54450

Rather than just agreeing with his patients'self diagnosis of myalgic encephalomyelitis, I do hope it has occured to him that there are tests available to rule out other medical conditions that cause exhaustion, pain etc. Such as cancer, hyperparathyroidism and thyroid problems.

 

[Scarecrow]

Apology aside, Noreen Buckley's letter is about as bad as the Collings & Newton response letter. It heaps insult upon insult.

It also does not necessarily represent the views of the authors.
.................................

This piece was written purely as a hypothetical deliberation.

"Does not necessarily"? So does it or doesn't it? Is it usual to write a letter that doesn't represent your own views without stating so. Yes, they were clearly presenting a hypothesis but in doing so were they not attempting to explain why CBT and GET are, in their opinion, "treatments with significant evidence for the efficacy in CFS treatment"? Was that not representing their views?

It was naïve of the authors not to consider the implications of a wider publication via the internet of what was intended to spark debate in the medical arena.

She might be right about the naïve part. Or perhaps they were just smug and arrogant. But isn't it one of the functions of any forum to spark debate? That and to pontificate of course. The claim that sparking debate was the intent hardly defends the utter drivel that we were subjected to.

I hope that the response letter isn't withdrawn. It was a matter of opinion, not fraudulent or shoddy science to be retracted. I'm more than happy to leave that particular honour to the PACE trial. Far better for the letter to be left as public record.

The authors should apologise or not as their own consciences dictate. Freedom of speech includes the freedom to make a tit of yourself and live with the consequences. Don't let the evidence be removed.

batshit crazy

Indeed.

Sorry, Valentjin. Don't know how to quote you properly but I did like your way with words.

 

[WillowTree]

What incredible arrogance, ignorance, stupidity, and cruelty expressed by these so-called "health care professionals." It's comparable to kicking an injured animal found by the side of a road, with no pity or concern for its welfare. They are mocking people debilitated by a serious, complex neurological and immunological disease. I am so appalled. This must stop. All I can say to them is open your eyes and your mind, people. Get informed instead of living in your own little warped world. Read the information coming from the latest, valid, truly scientific biomedical research being done on ME/CFS. And then open your heart, as well.

 

[Dolphin]

I think that the BMJ's RR are close to an internet forum - they have all sorts of barmy stuff up there.

The BMJ have serious problems with the way in which they cover issues around CFS, and the way in which they select which comments should be published in print, but I don't think that them posting this up online is a problem.

Yes. It works both ways: patients get a chance to speak there with letters that don't need to be "tight" or referenced and so wouldn't be seen in lots of other outlets.

 

[Jonathan Edwards]

I am inclined to agree with Sasha. There are comments from patients that are just be expressions of personal views, so it is clear that this RR forum is not intended to be formal scientific material at all. But this particular response is written as if it was a paper. This is what makes it so pathetic - rather than submit it as a paper it has been sent to the comments page. And it deserves to be moderated out on the grounds of being grossly offensive in the way the cartoons of Mohammed probably did - if not more so. You choose to be a muslim. You do not choose to have ME/CFS. The idea that you can dress up an insulting claim that people are just inventing their illness as a 'scientific theory', and an inane and unoriginal one at that, and 'pretend-publish' it in a comments list is offensive not just to patients but to any one who wants to take pride in being a member of a health care profession. In fact nobody in scientific medicine has taken the BMJ seriously for years - it's a bit like Lyon's Corner Houses were in the late 1960s - a memory of a genteel mediocrity of former times. Dark brown tea and half stale scones. It seems to have taken that role to heart in recent years.

 

[Bob]

What is extraordinary to me is not that there are some doctors who joke about this in privacy - I think we all knew that that went on - but that one of the two top general medical journals in the UK chose to publish it and thereby legitimise it. Just jaw-dropping.

Dr Shepherd also commented on MEA's Facebook page that pretty much anything gets through onto BMJ's RR pages and that they're not subject to the same level of editorial control as articles, but who is aware of that? I wasn't, until I read it just now, and I think it's a big mistake on the BMJ's part. They're a highly prestigious journal and they lend that prestige to anything they publish. I think they have to accept responsibility.

Yes, the e-comments facility allows most comments to be published, as long as they aren't illegal.
I quite like this because it makes it a democratic process, without a gate-keeper.
It means that we can challenge what's been said on an equal footing.

I think I'd rather that these comments were aired in public, so that we know what is thought in private.
It allows us to challenge the mind-set.
Otherwise, the health services staff are having these thoughts and discussions behind our backs amongst themselves anyway, unchallenged.
At least this exposes them for what they are.

Those comments are so utterly ignorant that I think it' may actually help us to show the public what we're up against.

 

[shahida]

Two related words come to mind:EGOS and POWER. A lot of it's about having and maintaining power to own the narrative. And in relation to the comment about MS and MRI scans and moving on to other diseases, 'Prof' Wessely is on record saying he hopes to/is looking at people who suffer from problems with mobile phones. All quite unashamedly.

 

[Dx Revision Watch]

http://www.bmj.com/content/329/7472/928?tab=response-form

Submit a rapid response to this article
Please note:

• Your name will be published with your response. Include your email address in the text of your response if you want others to see it.
• Once published, you will not have the right to remove or edit your response. The BMJ may remove or edit responses at its absolute discretion.
• A proportion of responses will, after editing, be published online and in the print journal as letters
• If patients could recognise themselves, or anyone else could recognise a patient from your description, please obtain the patient's written consent to publication before sending your response. See our patient consent form.
• By submitting this rapid response your are agreeing to our full rapid response requirements.

http://www.bmj.com/about-bmj/resources-readers/responding-articles

Responding to articles

Anyone can respond without a subscription to any article published on bmj.com by sending a rapid response.

Rapid responses are electronic letters to the editor. Our weekly letters are edited selections of posted rapid responses and are indexed in PubMed. Rapid responses are not indexed in PubMed but they have their own URL and are retrievable in an advanced search of bmj.com in perpetuity. Thus a rapid response is published with its first appearance online.

The corresponding author of every article in The BMJ receives an automated email when the paper is published online, and an automated reminder whenever a rapid response is posted to the article on bmj.com. Given that authors have an academic duty to respond to substantive criticism of their work, The BMJ expects authors to post their own rapid responses on bmj.com in reply to any such substantive comments, and editors may send reminders about this.

[...]

Terms and conditions for rapid responses
When you submit a rapid response, you agree to the following terms and conditions, which may be amended from time to time:

• You must declare any competing interests.
• We aim at posting within 24 hours all responses that contribute substantially to the topic. We aim at posting responses every day, and we run a rota to handle weekends, but it is at our absolute discretion whether we publish any particular response.
• We won’t publish responses that we consider inappropriate. We won’t publish responses that are likely to end us up in legal difficulties or that are obscene, libellous (or would require us spending time or money to establish that they aren't), or in some other way illegal—for example, inciting racial hatred, contempt of court, breach of intellectual property rights. We won’t publish responses that are over 1000 words long (excluding references), incomprehensible, insubstantial, written in capital letters, not written in English, almost entirely a quote from somewhere else, gratuitously rude, or blatant advertising. We also won’t publish responses that give information on patients without their written consent, are sent by someone who does not provide adequate and accurate personal details, including a functioning email address, or are from people we suspect have used an alias or who do not respond to email. However, it is for us to decide whether we believe it appropriate to post a given response.
• We make our own judgments on the sorts of legal things we mentioned above rather than refer them to our lawyer. By far the commonest problem we see is libel. In nearly all cases the responses don't warrant us spending money to confirm our judgment that something is libellous (and we have experience from cases where we have consulted our lawyer that our judgment is usually right) or warrant us making an effort to substantiate defamation. The same applies to other breaches—contempt of court, copyright, etc.
• Individual editors largely make judgments alone. Occasionally editors consult each other.
• If only a line or two of an otherwise OK response is defamatory or extremely abusive we may delete the line and post the rest.
• We make no distinction between different types of respondent: doctors, health professionals, non-doctors, patients, people from the UK, people from other countries, members, non-members, etc. We pay attention only to the content.
• If patients can recognise themselves from your description or anyone else can recognise the patient, please obtain the patient’s written consent to publication before sending your response. Download the patient consent form here
• Your response must be original and not infringe any third party's intellectual property right.
• We minimally edit rapid responses. We place the onus for correct spelling and punctuation firmly on the authors, and we won't correct these errors before or after publication.
• Authors are responsible for the accuracy of what they say in their rapid responses. We cannot check facts, though we may challenge authors if we think they are wrong and may ask them to substantiate what they say—for example, by giving a reference. We also do not check references to say that they really say what they are claimed to say: that, too, is the author's responsibility.
• Your name will be published with your response. If you want your email address to appear on the website, include it in the body of the text of your response.
• We reserve the right to edit responses before and after publication.
• Once a response has been published on the website, you will not have the right to have it removed or edited in any way. The BMJ shall, however, be able to remove any article at its absolute discretion.
• All published responses are eligible for publication in the paper or other versions of the BMJ and all other BMJ Group publications and can be sublicensed to third parties for their use as deemed fit by the BMJ Group, including within local editions, and in all of the foregoing these are within any media known now or created in the future.
• Although we try to deal with all of our authors in as courteous and timely manner as possible, dealing with tricky rapid responses is a low priority for us because our threshold for posting rapid responses is low.
• We try to avoid entering into lengthy correspondence about why we have not posted a rapid response. Again, it is not a good use of our resources and it is at our discretion.

 

[Bob]

The article [...] does not necessarily represent the views of the authors.
...
This piece was written purely as a hypothetical deliberation.

It does not reflect the authors’ views on the realities of living with, managing or treating CFS/ME.

It was naïve of the authors not to consider the implications of a wider publication via the internet of what was intended to spark debate in the medical arena.

This response misses the point. The 'hypothetical deliberation' was deeply disrespectful to patients, and unscientific whatever the means of communication.

Clearly the authors believe the 'meme hypothesis' is a possibility, or they wouldn't want to "spark debate in the medical arena". And to believe it's a possibility that a neurological illness is a 'meme', despite all the scientific evidence, suggests utter professional incompetence at best.

And what would the purpose be to "spark debate in the medical arena"? To further denigrate patients? To further propagate non-scientific medieval 'medical' discussions? To further discuss that a disease is a meme?

The e-comment and the response from the Essex CFS services are utter-utter-utter nonsense.

The whole affair is non-professional, non-academic, and non-scientific nonsense.

And the Essex CFS Service should have acknowledged that in their response.


Ironically, they've sparked a bit of a backlash rather than a debate.

 

[rosie26]

Seriously ill people made a joke of by silly twerps writing while pondering their belly buttons. Unprofessional, they should be outed immediately from their jobs involving the care of ME/CFS patients. I think this highlights truthfully what we have had to put up with all these years. Desperate for research and all we get is the interfering of the pyschobabble specialty.

 

[A.B.]

'Prof' Wessely is on record saying he hopes to/is looking at people who suffer from problems with mobile phones.

The narrative he uses is always the same: basically, a narrative of persistent mass hysteria.

He did this with the Camelford water poisoning, CFS, gulf war illness, and maybe soon with people who say they have problems with mobile phones.

He seems to have built a career on defending interest groups that want to avoid taking responsibility.

 

[Bob]

Anyone can respond without a subscription to any article published on bmj.com by sending a rapid response.

Yes, it's worth pointing out, in case anyone didn't realise - Anyone can easily submit an e-comment to the BMJ.

If commenting, I suggest a polite but firm tone - backed up with any helpful evidence - to put their comments to shame.

 

[Dx Revision Watch]

How about redirecting some of the anger and frustration towards approaching clinicians and allied professionals to submit responses?

 

[OverTheHills]

This response misses the point. The 'hypothetical deliberation' was deeply disrespectful to patients, and unscientific whatever the means of communication.

Clearly the authors believe the 'meme hypothesis' is a possibility, or they wouldn't want to "spark debate in the medical arena". And to believe it's a possibility that a neurological illness is a 'meme', despite all the scientific evidence, suggests utter professional incompetence at best.

And what would the purpose be to "spark debate in the medical arena"? To further denigrate patients? To further propagate non-scientific medieval 'medical' discussions? To further discuss that a disease is a meme?

The e-comment and the response from the Essex CFS services are utter-utter-utter nonsense.

The whole affair is non-professional, non-academic, and non-scientific nonsense.

And the Essex CFS Service should have acknowledged that in their response.


Ironically, they've sparked a bit of a backlash rather than a debate.

I agree with Bob that the Essex CFS service response misses the point. Apparently it never occurs to the service manager to address whether the authors are fit persons to be leading the service, only to try and manage the media, keep the hospital's name out of the spotlight and generally cover their a##es.

Surely a more ethical response would have been to apologise for the distress caused by members of their staff, distance the hospital from the views expressed and (quietly) ask for their resignations?

OTH

 

[user9876]

I agree with Bob that the Essex CFS service response misses the point. Apparently it never occurs to the service manager to address whether the authors are fit persons to be leading the service, only to try and manage the media, keep the hospital's name out of the spotlight and generally cover their a##es.

Surely a more ethical response would have been to apologise for the distress caused by members of their staff, distance the hospital from the views expressed and (quietly) ask for their resignations?

OTH

I suspect the real problem is that the service as a whole agrees with the views expressed in the letter - not necessarily be meme rubbish but the statements used to justify it. I think the thing about support groups is one of White's themes and he is associated with the service.

Notice also the authors have not apologized just been told to try to get the BMJ to remove the article as its embarrassing. Or more likely they are worried that patients will not want to be referred to their service as they see the attitude of the staff. Then their nice little cash cow disappears.

 

[JoanDublin]

I'm lucky in that these twats are not in my jurisdiction. I live in Ireland. However I too have come across the 'disbelieving tone' described ever so well in their response. If they ever come within slapping distance of me I will give them a meme to remember. As a mother of a very sick 14 yr old who is desperately looking for answers, has been hospitalised eight times in just over a year and is trying so hard to get better and back to who he was two years ago, let them say those words to my face. Dispicable fuckweasels is what they are.

 

[SDSue]

Ignoring evidence is a clear sign that someone is not behaving rationally. Thinking might-bes and possiblies and maybes can be treated as certainty is another sign. Psychobabblers typically fall afoul of both of these issues.

 

[Esther12]

I think I'd rather that these comments were aired in public, so that we know what is thought in private.
It allows us to challenge the mind-set.
Otherwise, the health services staff are having these thoughts and discussions behind our backs amongst themselves anyway, unchallenged.
At least this exposes them for what they are.

That's my view too. I'd rather have these views in a public place than have it so that patients only ever get to face them alone in a doctor's office.

But this particular response is written as if it was a paper. This is what makes it so pathetic - rather than submit it as a paper it has been sent to the comments page.

It does seem a bit odd. Also, it doesn't cite or refer to the decade old article they're supposedly commenting on. I'd have thought it was a late night (maybe slightly drunken) post that was instantly regretted were it not for the fact that two people put their name to it - presumably they must have discussed and proof read it together.

I suspect the real problem is that the service as a whole agrees with the views expressed in the letter - not necessarily be meme rubbish but the statements used to justify it. I think the thing about support groups is one of White's themes and he is associated with the service.

Notice also the authors have not apologized just been told to try to get the BMJ to remove the article as its embarrassing. Or more likely they are worried that patients will not want to be referred to their service as they see the attitude of the staff. Then their nice little cash cow disappears.

They've still not released the results on mediators from PACE, but it looks like they did not find that support group membership affected anything (or not much) there from the hints we've had, eg: http://www.trialsjournal.com/content/12/S1/A144

They've still gone on promoting the idea that support group membership is harmful based on, I think, just one old piece of research which took no account for the possibility that joining a support group could be correlated with worse health, or longer illness.

Also, as they're results show that their interventionsead to almost no improvement in objective measures of capability, it wouldn't be that amazing if membership of a support group did mean that patients were less prone to response bias improving questionnaire scores in the way which they seem to have built their careers upon. That would not be a bad thing.

(I just read the discussion of when that was first released, and someone pointed to Sharpe's article for Unum as an example of their views on patients groups, and thought it might be of interest to others here too: http://issuu.com/maxhead/docs/unum_cmo_report_2002 ). All three of the PACE PIs reported COIs involving the insurance industry.

 

[Esther12]

Dr L Sam Lewis appears to work here:

http://www.wales.nhs.uk/sites3/page.cfm?orgid=929&pid=54450

Rather than just agreeing with his patients'self diagnosis of myalgic encephalomyelitis, I do hope it has occured to him that there are tests available to rule out other medical conditions that cause exhaustion, pain etc. Such as cancer, hyperparathyroidism and thyroid problems.

It does seem that he described a remarkably unethical way of 'managing' patients, and yet did so as if it is all the patient's fault for daring to say "'I think have "ME" ".